Transcript: Your Health Season 3 Episode 27 - Homecare Special | Feb 26, 2002

The title of the show appears: "Your Health." Clips of the episode are displayed behind the title sequence.

Maureen says TONIGHT, HOME
CARE.

Rose Giglio is in her forties, with short wavy brown hair with bangs. She wears a gray polo T-shirt.

Rose says YOU ARE A PRISONER WITHIN
THE FOUR WALLS IN ORDER TO
PROVIDE FULL-TIME CARE WITH
A PATIENT WHETHER THAT
PATIENT IS ELDERLY PARENTS
OR WHETHER IT'S YOUR
DISABLED CHILD.

Barbara McCormack says I AM A SINGLE PARENT AND I NEED TO GO TO WORK.
I DON'T WANT TO BE ON
WELFARE.

Maureen says FAMILIES IN
CRISIS.

Rose Marie Baker is in her forties, with short wavy white hair. She wears a burgundy jacket and a pair of hoop earrings.

Rose Marie says WHAT USED TO BE AN EIGHT
OR NINE, TEN-CLIENT DAY IS
NOW BETWEEN 14 AND 18 PEOPLE
THAT THEY SEE IN A DAY.

Maureen says A SHORTAGE OF
NURSES.

Elizabeth Palmer is in her mid-forties, with shoulder length slightly wavy blond hair with bangs. She wears a black top, a gray blazer and a pin.

Elizabeth says IT'S ALL ABOUT BUDGET,
BUDGET, BUDGET.
IT'S NOT ABOUT QUALITY OF
CASE, PATIENT CARE.
IT'S ABOUT KEEPING THE
BOTTOM LINE SO WE DON'T HAVE
A BUDGET.
WE CAN'T RUN A DEFICIT.

Helen Johns is in her fifties, with mid-length slightly wavy blond hair with side swept bangs. She wears black trousers, a black top, a mustard yellow blazer and a necklace.

Helen says RIGHT NOW IN THE
PROVINCE ABOUT 25 percent OF EVERY
BUDGET IS SPENT ON
ADMINISTRATION AND CASE
MANAGEMENT.
THAT'S A LOT OF MONEY NOT
GOING TO THE PATIENT.

Maureen says BEHIND ONTARIO'S
CLOSED DOORS.
THE HEALTH CARE SYSTEM.

The animated grid appears showing clips of a woman holding a baby, pills, a surgery, a needle and a man doing exercise.

The title of the program reads "Your Health." The "R" in "Your" ends with an "X." A caption over the title reads "Report on Home Care."

Maureen Taylor stands next to a screen in a studio. She is in her forties, with shoulder-length light brown hair. She wears a black top under a blue coat and hoop earrings.

Maureen says HELLO, I'M
MAUREEN TAYLOR AND WELCOME
TO A SPECIAL EDITION OF
"YOUR HEALTH" AN OUR REPORT
ON HOME CARE.
IN THE NEXT HOUR WE'LL
EXAMINE HOME CARE SERVICES
IN ONTARIO AND WHETHER
THEY'RE MEETING THE NEEDS OF
THE SICK, THE FRAIL AND THE
ELDERLY.
THE MIKE HARRIS GOVERNMENT
CREATED COMMUNITY ACCESS
CENTRES.
THEY WERE TO BE ONE-TOP
SHOPPING CENTRES FOR PEOPLE
WHO NEED NURSING AND HOME
MAKE ASSISTANCE IN THE OWE
TOE STAY OUT OF HOSPITALS
AND NURSING HOMES.
DID ANYONE ANTICIPATE THE
SHIFT TOWARD HOME CARE WOULD
INVOLVE SUCH A RELIANCE ON
FAMILY MEMBERS?
WE FIRST MET ROSE GILIO
SHE HAD GIVEN UP HER CAREER,
HER PERSONAL LIFE AND HER
FREEDOM TO CARE FOR HER
FRAIL AND AGED PARENTS.

A slate reads "Burden of Care. Produced by: Janet Aronoff."

Rose picks up his father and says UP WE GO.
AND DOWN.

She puts him on his bed and says THERE WE GO.
RELAX.
RELAX, RELAX.

A caption reads "Rose Giglio."

A clip shows Rose taking care of her parents.

Rose says IT'S EMOTIONALLY DRAINING
TO BE A CAREGIVER BECAUSE
YOU'RE NOT REMOVED FROM THE
CARE EVER.
YOU'RE BASICALLY TIED TO IT
24 HOURS.
IT'S PHYSICALLY EXHAUSTING,
DEPENDING ON THE LEVEL OF
CARE.
IF YOU'RE CARING FOR A
CHRONIC CARE MAN IT IS
PHYSICALLY EXHAUSTING AS
WELL.
AND I GUESS IT'S THE... YOU
HAVE TOTAL LOSS OF FREEDOM
OF MOVEMENT.
YOU ARE BASICALLY UNDER
HOUSE ARREST.
YOU ARE A PRISONER WITHIN
THE FOUR WALLS IN ORDER TO
PROVIDE FULL-TIME CARE FOR A
PATIENT, WHETHER THAT
PATIENT IS AN ELDERLY
PARENTS OR WHETHER IT'S YOUR
DISABLED CHILD.
YOU'RE BASICALLY IN PRISON
WITHIN THE FOUR WALLS AN YOU
CANNOT LEAVE UNLESS SOMEONE
CAN REPLACE YOU TO ENSURE
THE CONTINUITY OF THE CARE
FOR THAT PATIENT.

Maureen says PEOPLE LIKE ROSE
ARE OVERWHELMED CARING FOR A
SICK OR ELDERLY RELATIVE.
STUDIES SHOW THEY SUFFER
FROM DEPRESSION, ANXIETY,
GUILT AND LONELINESS.

Rose says EVENTUALLY YOUR FRIENDS
TOP CALLING.
YOU TOP CALLING THEM.
PRIMARILY BECAUSE YOU CANNOT
PARTICIPATE IN ANY
ACTIVITIES.
BUT ALSO BECAUSE YOUR WORLD
BECOMES SO NARROW THAT YOU
ONLY HAVE ONE TOPIC OF
CONVERSATION.
AND YOU KNOW THAT YOU CANNOT
KEEP TALKING ABOUT CAREGIVER
PROBLEMS EVERY TIME YOU MEET
YOUR FRIENDS.
SO YOU TOP SEEING THEM.
WHEN I BROUGHT MY FATHER
HOME IN NOVEMBER OF '94 IT
BEGAN WITH TWO HOURS OF
HOMEMAKING SERVICE PER DAY,
SEVEN DAYS A WEEK, AND A
VISIT FROM A NURSE I BELIEVE
AT THAT TIME ONCE A WEEK.
IN THE LAST SIX YEARS THE
HOMEMAKING SERVICE AND THE
NURSING VISITS HAVE GONE UP
AND DOWN AND ANYWHERE IN
BETWEEN.
THERE SEEMS TO BE NO RHYME
OR REASON AS TO HOW THEY ARE
INCREASED AND HOW THEY ARE
DECREASED.
WE HAVE HAD MORE SERVICE
THAN WE HAVE TODAY.
WE HAVE HAD LESSER ADVICE
THAN WE HAVE TODAY.
WE HAD LESSER ADVICE THAN WE
HAD WHEN WE FIRST ARRIVED
HOME, DESPITE FACT MY
FATHER'S DISEASE HAS
PROGRESSED.
THERE SEEMS TO BE NO LOGICAL
REASON IN THE WAY SERVICES
ARE PROVIDED.

A clip shows Rose changing his father.

A clip shows three people at a meeting.

A man says THAT'S A GOOD IDEA.
WE'VE GOT THOSE SOMEWHERE
HERE.

The caption changes to "Amani Oakley. Toronto Health Coalition."

Amani is in her forties, with long curly brown hair. She wears a red blazer.

Amani says THIS WOMAN IS A LAWYER
AND FOUNDER OF THE TORONTO
HEALTH COALITION A VOLUNTEER
ADVOCACY GROUP CONCERNED
ABOUT THE QUALITY OF HEALTH
CARE CANADIANS ARE GETTING.
AT THE MOMENT THE
ENTITLEMENT WHEN YOU ARE AT
HOME FOR HOME CARE IS, IN
FACT, QUITE SMALL.
THERE IS A VERY LOW CEILING,
WHICH HAS RECENTLY BEEN
DROPPED BY THE PROVINCIAL
GOVERNMENT.
SO NO MATTER HOW SICK YOU
ARE YOU CANNOT RECEIVE MORE
THAN A CERTAIN MAXIMUM.

Maureen says TIM YOUNG IS THE
EXECUTIVE DIRECTOR OF ONE OF
43 CCAC'S.

The caption changes to "Tim Young. Executive Director, East York Access Centre."

Tim is in his late forties, clean-shaven and with short graying hair. He wears a black suit, cream shirt and printed tie.

Tim says IN ONTARIO THE MAXIMUM
THAT YOU CAN GET IS 80 HOURS
OF PERSONAL SUPPORT IN THE
FIRST MONTH OF SERVICE AND A
MAXIMUM OF 60 HOURS OF
PERSONAL SUPPORT EVERY MONTH
THEREAFTER.
THAT MEANS A HOMEMAKER OR
PERSONAL SUPPORT WORKER CAN
COME IN FOR MAXIMUM OF SAY
TWO HOURS A DAY.
IF YOU'RE LOOKING AFTER, FOR
EXAMPLE AN INCONTINENT
MEMBER OF YOUR FAMILY THAT
TWO HOURS A CA DOESN'T GO
TOO FAR IN TERMS OF LAUNDRY
AND MOVING PEOPLE TO AND
FROM WASHROOMS AND ONE THING
OR ANOTHER.
SO THERE IS... IT'S QUITE
LIMITED AS WHAT TO WHAT WE
CAN PROVIDE.

Rose says AT THIS POINT IN TIME I
HAVE NO HOMEMAKING SERVICE
WHATSOEVER MONDAY THROUGH
FRIDAY.
I CARE FOR MY FATHER ALONE.
I DO HAVE THREE NURSING
VISITS MONDAY THROUGH
FRIDAY.
NOW THAT INVOLVES A VISIT OF
20, 30 MINUTES BY A NURSE.
MY FATHER IS... MY FATHER'S
CARE IS 12 HOURS, 24 HOURS.
SO THIS NURSING VISIT IS
JUST THAT, A VISIT.

Maureen says FOR YEARS, GOVERNMENTS
HAVE TOLD US IT'S CHEAPER
AND MORE COMPASSIONATE TO
TREAT PEOPLE IN THEIR HOMES,
THAT WE HAVE TO MOVE AWAY
FROM INSTITUTIONAL CARE TO
COMMUNITY CARE, AND THE
MONEY THE HOSPITALS SAVED
WOULD BE TRANSFERRED TO HOME
CARE.

Tim says RIGHT NOW 65 TO 70 percent OF
CCAC CLIENTS ARE COMING
STRAIGHT OUT OF HOSPITAL TO
US.
THE IMPLICATION IS THAT OVER
TIME MORE AND MORE SERVICES
FALL INTO OUR SECTOR.
THAT PUTS MORE AND MORE
PRESSURE ON OUR BUDGET.
EVEN THOUGH WE HAVE HAD
FUNDING INCREASES, THERE'S
STILL AN EXTRA PRESSURE ON
US.
WELL WHAT HAPPENS WHEN WE'RE
UNDER PRESSURE?
UNFORTUNATE LYRICS PEOPLE
THEN START LOOK AT PEOPLE
WHO COME TO US FROM THE
COMMUNITY AND SAY WELL, THIS
PERSON IS COMING OUT OF
HOSPITAL.
THEY GET TOP PRIORITY.
THAT PERSON WHO IS LIVING IN
THE COMMUNITY, IF YOU'VE GOT
LIMITED DOLLARS, PUT THEM ON
A WAITING LIST.

Rose says THE HOME CARE SYSTEM
STILL DOES NOT RECOGNIZE
THAT THE NEEDS OF THE
PATIENT SHOULD COME FIRST.
I FIND THAT THE PATIENT
NEVER COMES FIRST.

Tim says WE HAVE A COMPETITIVE
PROCESS WHERE NON FOR PROFIT
AND FOR-PROFIT AGENCIES FOR
PERSONAL WORKERS, HOMEMAKERS,
OCCUPATION THERAPY,
PHYSIOTHERAPY, SPEECH
LANGUAGE, SOCIAL WORK,
NUTRITION COUNSELLING ALL
COMPETE FOR CONTRACTS WITH
THE COMMUNITY CARE ACCESS
CENTRE.

Amani says SO WHAT END UP SHAPING
BASICALLY THE LOWEST BIDDER
GETS THE CONTRACT.
IN ORDER TO KEEP THE BIDS
THAT LOW.
MORE OFTEN THAN NOT, WE FIND
THAT IT IS PRIVATE
ENTERPRISE THAT'S CAN PICK
UP THE CONTRACTS, AND THEY
DO SO BY PAYING THEIR
EMPLOYEES EXTRAORDINARILY
BADLY.

Rose feeds her father and says DO YOU WANT IT?
OKAY.

Maureen says ROSE DID PUT HER
FATHER INTO A NURSING HOME,
BUT SHE HAD A TERRIBLE
EXPERIENCE AND BROUGHT THEM
HOME.

Rose says I HAVE A PROBLEM WITH PEOPLE
WHO TELL ME THAT WHAT I'VE
DONE IS A CHOICE.
IF THE ONLY CHOICE IS TO
ACCEPT NEGLECT AND POSSIBLY
THE MU SE OF MY ELDERLY
PARENTS IN AN ELDERLY CARE
FACILITY IN ORDER TO GO ON
WITH MY LIFE, IN ORDER TO GO
ON WITH MY CAREER.
AND THE ONLY OTHER OPTION IS
TO GIVE UP MY CAREER AND
TAKE CARE OF THEM MYSELF, I
DON'T THINK THAT'S A CHOICE.

Tim says WHAT DO WE REALLY EXPECT?
WHAT DOES THE BARRING MAN?
WHAT IS THE SOCIAL CONTRACT
BETWEEN A STATE AND THESE
INDIVIDUALS?
JUST A FEW YEARS AGO
INDIVIDUALS HAD THESE
SERVICES PROVIDED AT THE
STATE'S EXPENSE.
TAXPAYERS EXPENSE BY AN
INSTITUTION.
NOW IT'S SHIFTED BACK INTO
THE HOME.
WELL IDEALLY THAT'S WHERE
PEOPLE WANT TO BE IN.
A LOT OF FAMILIES WANT TO
HELP WITH CARE.
THEY DON'T WANT TO BE
CRUCIFIED IN THE PROCESS.

Rose says WHAT WE NEED TO DO IS TO
MAKE PEOPLE AWARE OF THIS
PROBLEM.
THAT EVERYBODY IS GOING TO
FACE AS THE AGED POPULATION
GROWS.
AND WE NEED TO BE AWARE SO
WE CAN STOP... START TO MOVE
TOWARDS A RESOLUTION FOR
EVERYONE.
A picture of Rose’s parents’ wedding appears with the caption "Rose’s father died in January. Six months before his death, all homemaking, nursing and respite care for Rose’s parents was cut off, except for two physiotherapy visits a week."

(music plays)

Maureen now sits in the studio with two guests.

Maureen says ROSE'S STORY IS
THE JUMPING OFF POINT FOR
OUR FIRST PANEL DISCUSSION.
SUSAN DONALDSON IS WITH THE
ONTARIO ASSOCIATION OF
COMMUNITY CARE ACCESS
CENTRES, AND IRENE HARRIS IS
WITH THE ONTARIO HEALTH
COALITION.

Susan is in her sixties, with short slightly wavy gray hair. She wears glasses, a white blouse with a bow and a black blazer.

Irene is in her late forties, with straight blond hair in a bob cut with bangs. She wears a cream turtle neck sweater and a brown blazer.

Maureen says WELCOME TO BOTH OF YOU.

Susan says THANK YOU.

Maureen says SUSAN, HOW
TYPICAL IS ROSE OF THE
CLIENTS WHO NEED HOME CARE
SERVICES?

The caption changes to "Susan Donaldson. Ontario Association of CAACs."

Susan says THERE'S A RANGE ACROSS
THE PROVINCE AND ALSO WITHIN
NCACC'S.
THE ELDERLY POPULATION AND
THE... ARE A GROWING NEED,
BUT ON THE OTHER HAND,
THERE'S ACTUALLY FEWER OF
THOSE CASELOADS NOW THAN
THERE USED TO BE A NUMBER OF
YEARS AGO.

Maureen says WHY IS THAT?

Susan says WELL THE PRESSURES I
THINK WHEN TIM YOUNG WAS
SPEAKING EARLIER, HE
MENTIONED ABOUT THE PRESSURE
WITH THE DISCHARGE OF
CLIENTS OR PATIENTS FROM
HOSPITAL INTO THE COMMUNITY.
AND SO WE'RE SEEING A SHIFT
OF MAINTAINING PEOPLE IN THE
COMMUNITY TO THE MORE
SHORT-TERM NEEDS OF
INDIVIDUALS EVEN BEING
ADMITTED INTO THE HOSPITAL
OR BEING DISCHARGED EARLY.

Maureen says WE ALWAYS HEAR
WHEN WE TALK ABOUT HEM CARE
THE PEOPLE WHO DON'T QUALIFY
SAY THEY SHOULD QUALIFY FOR
HEM CARE AND THE PEOPLE WHO
HAVE SOME HOME CARE SAY THEY
SHOULD HAVE MORE.
WE CERTAINLY HEARD ROSE
VOCALIZE THAT.
IRENE WHAT, WERE YOUR
THOUGHTS?

The caption changes to "Irene Harris. Ontario Health Coalition."

Irene says WELL, YOU KNOW, IT'S A
VERY WELL TOLD STORY IN THIS
CLIP.
WHAT WE'RE HEARING FROM A
LOT OF ESPECIALLY SENIOR CITIZENS PEOPLE WITH
DISABILITIES IS THE SERVICE
THAT'S USED TO BE WHAT WE
THOUGHT WITH HOME CARE THE
HOMEMAKING, THE PERSONAL
SUPPORT SERVICES.
WHAT'S HAPPENED BECAUSE OF
THE WAY HOME CARE HAS BEEN
RESTRUCTURED, THOSE SERVICE
HAVE NOW BEEN CUT OFF.
WE'VE ESTIMATED THERE'S
APPROXIMATELY 10,000 SENIORS
ACROSS ONTARIO WHO HAVE BEEN
DENIED HOMEMAKING SERVICES,
FOR EXAMPLE.
IT'S REALLY HEARTBREAKING
BECAUSE HOME CARE WAS MEANT
TO HELP PEOPLE KEEP THEIR
INDEPENDENCE IN THE HOME.
NOW WHAT HOME CARE HAS
BECOME IS REALLY A HOSPITAL
IN THE HOME, WHEREAS SUSAN
MENTIONED, ALL THESE PEOPLE
GETTING DISCHARGED OUT OF
HOSPITALS TOO SOON ARE NOW
REALLY TAKING UP ALL OF THE
HOME CARE THAT'S AVAILABLE.

Maureen says SO?

Susan says IT'S INTERESTING BECAUSE
ORIGINALLY WHEN HOME CARE
WAS SET UP IT WAS FOR THE
ACUTE CLIENT, THE SHORT
STAY.
THAT WAS THE VERY FIRST
COMPONENT OF ANY HOME CARE.
AND THEN IN THE 80s THAT'S
WHEN THEY BROUGHT IN WHAT
WAS CALLED CHRONIC CARE,
WHICH IS MORE THE LONG-TERM.

Maureen says BECAUSE WE
DECIDED AS A SOCIETY WE
DIDN'T WANT MOM AND DAD IN
NURSING HOMES FOR SUCH A
LONG PERIOD OF TIME BECAUSE
WE'RE LIVING LONGER.
WELL DID WE MAKE A MISTAKE
IN THAT, OR WAS THAT THE
RIGHT THING TO DO?

Susan says I THINK IT REFLECTED WHAT
SOCIETY WANTED AND
INDIVIDUALS FOUND WAS
APPROPRIATE.
IN THE RECENT PAST WE'VE
SEEN IT STABILIZING OF THE
ECONOMY.
SOME OF THE COMMENTS ROSE
WAS MAKING ABOUT SERVICES
BEING CUT BACK AND PERSONAL
SUPPORT CAN WELL HAVE BEEN
REFLECTING.

Maureen says STABILIZING
DOLLARS IS ANOTHER WAY TO
SAY IT.
THEY FROZE THE BUDGETS.

Irene says THAT'S RIGHT.
THEY TOOK ALMOST A BILLION
DOLLARS OUT OF THE HOSPITAL
BUDGET AND SAID SOME OF THAT
WILL GO TO HOME CARE.
WHAT THEY ALSO DID IN THE
RESTRUCTURING OF HEM CARE
FOR THE FIRST TIME WE'VE
SEEN THE PRIVATE SECTOR
COMPANIES DELIVERING HOME
CARE, TAKING AWAY FROM THE
NON PROFITS.
SO THERE'S A PROFIT ELEMENT
IN THERE SO THAT A LOT OF
THE MONEY WILL BE GOING
TOWARDS A PROFIT MARGIN AS
OPPOSED TO GOING FORWARD FOR
THINGS LIKE HOMEMAKING
SERVICES.

Maureen says ALL RIGHT.
WE'RE GOING TO TALK MORE
ABOUT THAT, FOR-PROFIT
SITUATION A LITTLE LATER.
I HEAR LATELY A LOT OF
CCAC'S TELL US THEY DON'T
HAVE WAITING LISTS ANYMORE.
WHY IS THAT?

Susan says WELL CCAC'S HAVE A WHOLE
RANGE OF WAITING LISTS.
THEY HAVE WAITING LISTS FOR
INDIVIDUALS WHO ARE TO BE
PLACED IN LONG-TERM CARE
FACILITY.
YOU HEAR ROSE MENTION THAT
HER DAD HAD BEEN THERE AND
THEN SHE BROUGHT HIM HOME.
SO THAT'S ONE WHOLE SET OF
WAITING LISTS, WHICH CCAC'S
ARE RESPONSIBLE FOR.
THEY ALSO MAY WELL HAVE A
WAITING LIST IF THERE ARE
ADULT DAY CARE CENTERS IN
THEIR COMMUNITY.
THEY'RE ALSO MANAGING THOSE
WAITING LISTS.
HISTORICALLY, WE HAVE HAD
WAITING LISTS FOR THE
THERAPY SERVICES, THE WHOLE
RANGE OF THERAPY SERVICES
BECAUSE WE'VE NEVER HAD
ENOUGH THERAPISTS TO
PROVIDE.

Maureen says WHAT ABOUT THE
WAITING LIST FOR THE
HOMEMAKING SERVICES OR
NURSING CARE.
WHAT HAPPENED TO THOSE
WAITING LISTS IN.

Irene says WHAT WE SAW HAPPEN WAS
THE GOVERNMENT AT ONE POINT
PUT IN A REGULATION.
AT ONE POINT WE WERE ABLE TO
APPEAL IF WE WEREN'T TABLE
GET HOME CARE WE NEEDED
THERE WAS AN APPEAL
PROCESS.
THE DWFT THEN BROUGHT IN A
REGULATION HAD A SAID HERE'S
THE LIMITS WE'RE GOING TO
GIVE ON HOME CARE.
REALLY I THINK IT WAS THEN
THAT YOU WERE TOLD YOU'D
ONLY GET HEM MAKING SERVICE
IF'S YOU DIDN'T HAVE FAMILY
MEMBERS THAT COULD DO IT FOR
YOU FIRST.
THERE WAS ACTUALLY A WHOLE
SERIES OF RULES THAT THE
CAAC'S HAD TO FOLLOW THAT WE
BELIEVE TIED THEIR HAND AND
WERE UNABLE... HOME MAKE AND
PERSONAL SUPPORT CAME WAY
BEHIND.

Maureen says THE CRITERIA
DIDN'T CHANGE AND THE
WAITING LISTS EVAPORATED.

Susan says NO.
I THINK IT'S A LITTLE BIT
COMPLICATED.
THERE WERE ALWAYS THOSE
MAXIMUMS IN PLACE, THE
GUIDELINES.
YOU'RE RIGHT.
IT WASN'T A REGULATION.
THERE IS IT STILL AN APPEAL
PROCESS THAT CAN TAKE PLACE
NOT BEYOND THE MAXIMUM.
I THINK THERE WAS MORE
FLEXIBILITY.
THERE ARE WAITING LISTS FOR
PERSONAL SUPPORT.
THERE HAVE ALWAYS, EVEN IN
THE DAYS OF THE HOMEMAKER
PROGRAMME THERE WAS ALWAYS
WAITING LISTS FOR THE
HOMEMAKING PERSONAL SUPPORT
SERVICES.

Maureen says ARE THERE PEOPLE
OUT THERE WHO CAN'T EVEN GET
ON THE WAITING LIST THAT
FEEL THEY SHOULD HAVE CARE.
ONE OF THE COMPLAINTS WE
HEAR FROM PEOPLE WHO GET
HOME CARE IS THE LACK OF
CONTINUITY IN THE NURSES AND
HOMEMAKERS PROVIDING CARE.
IN FACT, THERE IS AN
ALARMINGLY HIGH TURNOVER OF
OF STAFF IN THE COMMUNITY
CARE.
WE WENT OUT TO FIND OUT WHY.

A slate reads "Leaving Care. Produced by: Janet Aronoff."

Maureen says AS A COMMUNITY
CARE NURSE FOR ALMOST 30
YEARS LYNDA
PUTNAM KNOWS HOW MUCH HER
PATIENTS DEPEND ON HER.

Lynda is in her forties, with short wavy blond hair. She wears a white blouse with blue collar and a chain necklace.

Lynda says IT'S INCREDIBLE TO KNOW
HOW MUCH THEY APPRECIATE THE
NURSE'S VISIT.
IN SOME INSTANCES THE PEOPLE
THAT WE SEE, THAT'S THE ONLY
PEOPLE THEY SEE.

Maureen says ROSE MARIE BAKER
USED TO LOVE THE CHALLENGE
OF BEING A COMMUNITY CARE
NURSE.

The caption changes to "Rose Marie Baker. Former Community Care RN."

Rose Marie says NURSING IN THE COMMUNITY
WAS MORE EXCITING THAN BEING
IN HOSPITAL.
AND MORE CHALLENGING IN MANY
WAYS BECAUSE YOU WERE IT.
THERE WAS NO CALL BELL TO
RING AND ASK FOR BACKUP.
THERE WASN'T A REPUBLICAN
WHERE YOU COULD GO GET A
NICE STERILE TRAY FOR DOING
A DRESSING CHANGE.
YOU HAD TO BOIL INSTRUMENTS.
THERE WERE CHALLENGES.
BUT IT WAS ALSO I THINK FAR
MORE REWARDING BECAUSE YOU
TOOK CARE OF ALL OF THEIR
NEEDS.
YOU WERE IT.
IT WAS VERY IMPORTANT TO THE
PEOPLE THAT I TOOK CARE OF
THAT THEY BE ABLE TO STAY
HOME BECAUSE I WAS ON THE...
TEAM IN DEALING WITH PEOPLE
WITH LIFE-THREATENING
ILLNESS PUT PRIMARILY
CANCER.
THEY WANTED TO STAY HOME.

Maureen says THE GOVERNMENT
PREFERRED THEY TODAY HOME,
TOO.
IT STILL DOES.
SO DO CASH-TRAPPED HOSPITALS
WHO DISCHARGE PATIENTS
QUICKER AND SICKER.

Rose Marie says THE BIGGEST CHANGE IT
THAT OCCURRED OVER THE YEARS
FROM WHEN I FIRST STARTED IN
THE COMMUNITY TO WHEN I
FIRST LEFT WAS THE... OF THE
PERSON COMING HOME.
WE WITH START OUT WITH
PEOPLE COMING HOME WHO
NEEDED RESIMPLE INTERVENTION
FOR SYMPTOMS.
AND TOWARD THE END EVEN IV
THERAPY, WE WERE DOING VERY
COMPLICATED WOUNDS THAT THEY
NEVER SHOULD HAVE GONE HOME
WITH.

The caption changes to "Lynda Putman. Community Care RN."

Lynda says THE TYPE OF PATIENTS THAT
WE NOW ARE MORE ACUTELY ILL.
THEY NEED DIFFERENT
TREATMENTS THAN WHAT WE USED
TO BE ABLE TO DO THAN IN THE
70s.
WE WOULD NEVER SEE AN IV IN
THE HOME FOR INSTANCE IN THE
70s.
WE WOULD NEVER SEE DIALYSIS
IN THE HOME IN THE 70s.
THESE ARE QUITE COMMON.

A line graph appears with the caption "Community Care Access Centres."

A line grows from 800 million in 1997 up to 1.14 billion in 2001.

Maureen says COMMUNITY CARE
ACCESS CENTRES OR CCAC'S WERE
SET UP IN 1997 TO PROVIDE
ONE-TOPPING SHOPPING FOR
HOME CARE.
AS THE FASTEST GROWING
SECTOR IN HEALTH CARE THEIR
BUDGETS IN ONTARIO ROSE THAN
ALMOST 36 percent IN 1998 TO 2001.
BUT DESPITE EVER INCREASE IN
DEMANDS, LAST JUNE THE
ONTARIO GOVERNMENT FROZE
CCAC BUDGETS AND PROHIBITED
DEFICITS.
AS A CASE MANAGER NOR A CCAC
ELIZABETH PALMER ALLOCATES
HOME CARE IN THE COMMUNITY.

Elizabeth says AS A CASE MANAGER MY
FEELINGS RUN FROM BEING
FRUSTRATED, THEY RUN FROM
BEING HIGHLY STRESSED AND
THEY RUN FROM BEING ANGRY
AND THEN ULTIMATELY SAD.
BECAUSE THE MESSAGE HAS GONE
OUT AFTER THE HEALTH CARE
RESTRUCTURING COMMISSION
THAT THE COMMUNITY CARE
ACCESS CENTRES WERE THE
SOLUTION TO RESTRUCTURING OF
THE HOSPITALS.
SO YOU DOWNSIZE THE
HOSPITALS.
THERE'S FEWER BEDS AND
PEOPLE ARE GOING TO GO INTO
LAUNDRY ROOM CARE FASTER OR
GO HOME TO THE COMMUNITY
BECAUSE THE COMMUNITY
SERVICES ARE GOING TO BE.
THERE WELL CUES ME.
THEY DID NOT ADD ANYTHING TO
OUR BUDGET.

Maureen says CCAC'S SUBCONTRACT WORK
TO TWO AGENCIES.
THESE AGENCIES MUST COMPETE
WITH EACH OTHER FOR EVERY
CONTRACT M-WORRY THAT CCAC'S
ARE REWARDING CONTRACTS TO
THE LOWEST BIDDER AND TO BE
THE LOWEST BIDDER YOU HAVE
TO CUT CORNERS.

Rose Marie says I WAS ASKED TO JUSTIFY
MANY EXPENSES.
I REMEMBER ONE DAY GETTING A
PHONE CALL FROM THE CASE
MANAGER AT HOME CARE WHO
SAID, YOU SENT IN A
REQUISITION FOR DRESSING
SUPPLIES FOR THIS GENTLEMAN.
I SEE THAT YOU'VE GOT EIGHT
FOUR BY FOUR SQUARES ON
HERE.
DO YOU REALLY NEED EIGHT
FOUR BY FOUR SQUARES.
I SAID.
NO I GUESS I COULD RINSE A
FEW OUT AND REUSE THEM.
I DID ASK FOR ANYTHING I
DIDN'T NEED FOR MY CLIENT.

Lynda binds a patient’s leg and says IS IT BOTHERING YOU AT
ALL?

The patient says NO, NOT REALLY

Rose Marie says WE
WERE QUESTIONED ON
EVERYTHING.
DID YOU REALLY CRY OF THAT
MANY MILES?
WE WERE QUESTIONED ON HOW
MANY MINUTES WE SPENT WITH A
PERSON, HOW MANY DIFFERENT
SERVICES WE CALLED IN.
IF I HAD MADE A REQUEST FOR
A DIETICIAN.
DO YOU REALLY NEED A
DIETICIAN.
YES, I REALLY NEED A
DIETICIAN.
I WOULDN'T CAN.

The caption changes to "Elizabeth Palmer. Case Manager, CCAC."

Elizabeth says THE MESSAGE WE'RE GETTING
INADVERTENTLY FROM THE
MESSAGE OR FROM THE
GOVERNMENT SPECIFICALLY IS
WE MUST LOOK AT THE BUTT
BUDGET.
IT'S ALL ABOUT BUDGET,
BUDGET, BUDGET.
IT'S NOT ABOUT QUALITY OF
CARE, PATIENT CARE.
IT'S ABOUT KEEPING THE
BOTTOM LINE.
WE CAN'T RUN A DEFICIT.

Maureen says OVER TIME
WORKING CONDITIONS FOR
NURSES DETERIORATED.
PAY FOR TRAVEL TIME AND
MILEAGE WAS CUT WHILE THE
PATIENT LOW GREW.

Rose Marie says WHEN I FIRST JOINED THE
COMMUNITY NURSING TRAVEL
TIME WAS VERY MARGINALLY
TAKEN INTO ACCOUNT.
AND' WERE REIMBURSED FOR
MILEAGE AS WELL.
AND REIMBURSEMENT WAS NOT
BAD.
IT WAS QUITE COMPARABLE.
BUT IT HAS DIMINISHED TO I
THINK ABOUT A THIRD OF WHAT
IT WAS WHEN I STARTED IN
1991, FROM WHAT I
UNDERSTAND.
MOUNTAIN OF AGENCIES DON'T
PAY MILEAGE AT ALL.
WHAT USED TO BE AN EIGHT OR
NINE OR TEN-CLIENT DAY IS
NOW BETWEEN 14 AN 18 PEOPLE
THAT THEY SEE IN A DAY.
YOU CAN'T GIVE GOOD CARE AND
SEE THAT MANY PEOPLE IN A
DAY.

Maureen says NOW NURSE HAVE
LESS TIME AND SEE MORE
PATIENTS WHO REQUIRE MORE
COMPLICATED CARE.
THEIR HOURS ARE LONG AND
UNPREDICTABLE.

Rose Marie says IT IS A BRUTALLY LONG
DAY.
I HAVE A NUMBER OF FRIENDS
WHO ARE STILL DOING THIS NOW,
AND THEY START WORK AT 7:00
IN THE MORNING AND SOMETIMES
ARE NOT TOTALLY FINISHED AT
HOME.

Barbara Wall is in her sixties, with short wavy brown hair. She wears black trousers, a striped white turtleneck and a blue jacket.

Barbara says THE COMMUNITY CARE
ACCESS CENTRE LEGISLATION
WOULD HAVE A DEVASTATING
IMPACT ON WHAT IS ALREADY A
HORRIBLE MESS IN THE
COMMUNITY.

Maureen says BARBARA WALL,
EXECUTIVE DIRECTOR OF THE
ONTARIO NURSE'S ASSOCIATION
SAYS COMMUNITY CARE NURSES
ARE TREATED UNFAIRLY.

Barbara says WHAT WE BOUND TO SOME OF
THE PRIVATE AGENCY IS THIS
NURSES WERE EXPECTED TO LOOK
AFTER X NUMBER OF PATIENTS.
BUT THOSE PATIENTS COULD BE
SPREAD AROUND 16 HOURS.
SO I'VE TALKED TO YOUNG
NURSES AND THEY'RE WORKING
SPLIT SHIFTS.
THEY HAVE A WORKING ENVIRONMENT THAT IS
STRETCHED THE WHOLE DAY.
THEY HAVE TO WORK MANY
HOURS.

Rose Marie says WHILE COMMUNITY NURSES
ARE QUITE UNDER VALUED WE
HAVE AS MANY SKILLS AS
NURSES IN THE HOSPITAL AND
THAT'S NOT RECOGNIZED.
WE'RE NOT WELL COMPENSATED
FOR WHAT WE DO IN THE
COMMUNITY, NOT EQUALLY.

Maureen says COMMUNITY CARE NURSES
MAKE ON AVERAGE 20 percent LESS THAN
NURSES ON HOSPITALS.
TEMPORARY EMPLOYEES.

The caption changes to "Barbara Wahl. Ontario Nurses’ Association."

Barbara says NO REDUCTIONS NO, PAY
INCREASES, ET CETERA.
FULL-TIME JOBS AN BENEFITS
TO BECOME CASUAL WORKERS.
SO THEY GAVE UP THEIR JOB
SECURITY AN THEIR BENEFITS.
THAT'S CRITICAL.

Maureen says FOR ROSE MARIE THE JOB
JUST BECAME TOO
UNPREDICTABLE.

Rose Marie says IT WAS GETTING
REALLY DIFFICULT TO COUNT ON A
FULL DAY'S WORK.
IT SEEMED THEY WERE GETTING
RID OF A NUMBER OF FULL-TIME
NURSES AND HAVING MORE
PART-TIME NURSES.
I WAS A SINGLE MOTHER WITH A
MORTGAGE.
AND I HAD... I HAD EXPENSES
TO PAY.
SO I NEEDED SOMETHING THAT
WAS FAR MORE STABLE.
IT WASN'T STABLE.
IT WAS BECOMING MORE
UNSTABLE.

Maureen says SO LIKE
THOUSANDS OF OTHER QUALIFIED
NURSES ROSE MARIE ENDED UP
LEAVING COMMUNITY CARE
NURSING ALTOGETHER.
NOW ROSE MARIE RECRUITS AND
TRAINS VOLUNTEERS FOR THE
HOSPICE OF WATERLOO REGION.
IRONICALLY CCAC CASE
MANAGERS COME TO HER ASKING
FOR UNPAID VOLUNTEERS TO
DO WORK THAT NURSES ARE
SUPPOSED TO DO.

Rose Marie saysTHE SYSTEM IS RELYING
MORE AND MORE ON VOLUNTEERS
TO DO A PAID EMPLOYEE'S
WORK.
THE DEMAND FOR MY VOLUNTEERS
INCREASED IN A HUGE WAY AN I
WOULD GET A LOT OF
INAPPROPRIATE REQUESTS.
I WOULD HAVE A CASE MANAGER
CALL AND SAY I HAVE THIS
GENTLEMAN WHO NEEDS A BATH
EVERYDAY.
CAN YOUR VOLUNTEER DO THAT?
I SAY NO.
THAT'S A NURSING JOB OR
THAT'S A HOMEMAKER'S JOB.
I'M NOT GOING TO TAKE MY
VOLUNTEER AN PUT THEM IN A
SITUATION THAT IS GOING TO
BE REPLACING A PAID
EMPLOYEE.
IT'S IN THE ETHICAL.

Maureen says IN THE END THE
ONES THAT PAY THE PRICE FOR
A COMPETITIVE SYSTEM ARE THE
PATIENTS WHO NEED THE CARE.

Barbara says EVERYDAY MORE AND MORE
PEOPLE ARE COMING FOR HEM
CARE SERVICES ONLY TO FIND
THE HEM CARE DOORS ARE SLAM
IN THEIR FACES.
WE'RE TELLING FRAIL
ELDERLY 80 AND 90-YEAR-OLDS
THAT YOU CAN ONLY HAVE HALF
THE HOMEMAKING.
YOU DON'T REALLY NEED.
IT YOU'RE ON YOUR OWN.
HOW CAN WE DO THAT TO
PEOPLE?
THERE IS ENOUGH FUNDING TO
MEET THE NEEDS OF THESE
PEOPLE BECAUSE IF THEY WERE
IN HOSPITAL WE’D HAVE TO MEET
THEIR NEEDS AND WE DO.
[(music plays)]

A slate reads "Report on Home Care. Home care costs 50 percent to 75 percent less than institutional care. Source: Health Canada."

Back in the studio, Maureen says THERE'S THE
VIEW FROM SOME OF ONTARIO'S
COMMUNITY CARE NURSES.
NOW LET'S GET THE VIEWS OF
OUR PANEL.
WE STILL HAVE IRENE HARRIS
AN SUSAN DONALDSON WITH US
AND WE'RE JOINED BY WALTER
ROBINSON WHO WROTE A REPORT
ON HEALTH CARE FOR THE
CANADIAN TAXPAYERS
FEDERATION.
WELCOME, WALTER.

Walter is in his forties, clean-shaven and with short wavy brown hair. He wears a dark gray suit, a soft gray shirt and a printed gray tie.

Maureen says I'LL START WITH YOU.
HOW DO YOU SEE THE
INTRODUCTION OF
PRIVATIZATION AND
COMPETITION IN THE HOME CARE
SYSTEM?
GOOD THING?

The caption changes to "Walter Robinson. Canadian Taxpayers Federation."

Walter says WE THINK IT'S INEVITABLE
ACROSS THE HEALTH CARE
SYSTEM TO RESTRUCTURE...
IN THE HOME CARE SECTOR WORK LIKE SWEDEN
AND SINGAPORE.
THERE ARE REAL CHALLENGES.
THERE'S NO ACCOUNTABILITY AN
THE CONTRACTS AREN'T OPEN
FOR DISCUSSION.
YOU HAVE TO HAVE THAT AND BE
TRANSPARENT IN THE SYSTEM.
AS ONE OF THE EARLIER SEGMENTS
POINTED OUT DO YOU NEED AND
IT HARD JUST NOT BUDGET
PRESSURES IT MAKE THINGS
WORK TO PUT EVERYONE ON
EQUAL FOOTING.

Maureen says WE'VE HEARD I
SAY IN THE PIECE, SUSAN,
THERE ARE CRITICISMS THAT
CCACS END UP TAKING THE
LOWEST BIDDER.
YOU MURMURED NOT TRUE.

Susan says IT DID.
I USED TO BE AN CONNECTIVE
DIRECTOR OF THE ACC.
IN FACT WHAT HAPPENS IN MANY
CASES IS THAT THE MONEY POT,
THE FINANCIAL POT OF THE BID
IS NOT EVEN LOOKED AT UNTIL
THE QUALITY MEASURES HAVE
BEEN EVALUATED, AND THERE
ARE CRITERIA DRAWN UP AND
EVERY BID OR EVERY
SUBMISSION GETS REVIEWED BY
COMMITTEE AROUND THOSE
CRITERIA.
AND ALL THINGS BEING EQUAL,
I WOULDN'T ARGUE THEN YES
THE LOWER BID MIGHT GET
THAT.

Irene says WE'VE REALLY SEEN IN A LOT
OF OUR COMMUNITY
ORGANIZATIONS THE AREAS LIKE
HALIBURTON, PLACES LIKE
BROCKVILLE, CORNWALL,
WINDSOR WHERE A LOT OF THESE
NON PROFIT GROUPS HAVE REALLY
FOLDED BECAUSE THEY CAN'T
COMPETE WITH THE PRIVATE
SECTOR.

Walter says I THINK PART THAT IS A
FUNCTION.
WHAT YOU WANT TO HAVE FOLLOW
IS THE CONSUMER OR THE
FAMILIES ARE SOVEREIGN IN
THAT SITUATION.
WE STILL HAVE THIS BLOCK
FUNDING FOR CERTAIN ACC
CLIENTS AND OTHERS ARE
DOLLARS FOLLOWING PATIENTS.
BASED ON... THAT'S THE
MISSING PIECE OF THE PUZZLE.
EXPENSIVE.
BECAUSE IT'S OUT OF HOME
IT'S OUT OF SIGHT, OUT OF
MINE.
WE EVEN ACKNOWLEDGE THIS FOR
PEOPLE ON ALL SIDES OF THE
ISSUE ALSO COMPETING AGAINST
IN THIS COMING HEALTH CARE
DEBATE.

Maureen says IF WE WERE
TALKING ABOUT DOLLARS I'M
SURE YOUR FEDERATION WOULD
APPRECIATE.
WHAT IS THERE... SAVING US
OODLES OF MONEY.
SUSAN?

Susan says I THINK THE HOME CARE
SYSTEM WAS NEVER INTENDED TO
REPLACE 24-7.
THE RANGE OF SERVICES THAT
WE PROVIDE.
THE INDIVIDUALS, WHETHER IT
BE THE FAMILIES AND
CERTAINLY, I THINK WILL
CONTINUE TO BE.
TO WHAT EXTENT I THINK IS
WHAT WOULD THE DEBATE NEEDS
TO BE ABOUT.

Maureen says WHAT ABOUT THE
PEOPLE WHO DON'T HAVE THOSE
KINDS OF SUPPORT?

Irene says AS THE NURSE DESCRIBED
THEY'RE DOING PROCEDURES
THAT NORMALLY WOULD BE DONE
IN HOSPITAL AT ONE TIME.
I WOULD SAY IF I'VE GOT A
PROCEDURE THAT WOULD BE
COVERING PROCEDURE THAT ARE
NOW IN HOME WHY ARE THEY NOT
COVERING THAT.
I SHOULD BE IN HOSPITAL.
WE'RE IN THE HOME FOR
DIFFERENT REASONS?
WHY IS THAT NOT EXTENDED TO
FREE UP HOME CARE BUDGETS.

Maureen says CAN WE AFFORD
THAT KIND OF SYSTEM THAT
IRENE ENVISIONED?

Walter says THE PUBLIC WILL ONLY
ACCEPT A CERTAIN BURDEN OF
TAXES.
THE LONG-TERM SOLUTION
ARRIVES IN PREFUNDING OR
ORGANISMS AND PREFUND OUR
LIFETIME HEALTH CARE AS MANY
INDUSTRIALIZED NATIONS ARE DOING.
PART THAT WILL GO TOWARD OWE
GEE I DON'T KNOW WHAT
PREFUND MEANS.
DO YOU MEAN ME SETTING UP
SOME RRSP.

Irene says LET'S TALK ABOUT TAX
DOLLARS THAT ARE GOING
PROFITS.
WE CAN SHOW EXAMPLES IN THE
COMMUNITY CARE ACCESS
CENTERS THAT HAVE TO GIVE
CONTRACTS TO PRIVATE
COMPANIES THAT COST MORE
THAN WHEN THE CCAC DID IT
THEMSELVES.
SO TAX DOLLARS ARE PAYING
PROFITS.

Walter says BUT WE'RE ALSO...

Susan says WELL I THINK NOBODY HAS
TO GIVE A CONTRACT TO
ANYBODY.
IT'S AN OPEN COMPETITION.
AN WE'VE NEVER HAD A DEBATE
ON THAT.
WE'VE NEVER DISCUSSED WHAT
IT IS WE UP HAVING PROVIDED
AND WHAT'S NOT.
THAT'S SOMETHING WE NEED TO
DO.

Maureen says I WANT TO THANK
YOU ALL.
MOST OF US THINK OF HOME
CARE AS MOSTLY MANAGE
SENIORS GET.
THERE ARE ABOUT 2,000
CHILDREN IN ONTARIO WHO HAVE
SUCH COMPLEX HEALTH NEEDS
THEY REQUIRE ROUND-THE-CLOCK
CARE AT HOME.

A slate reads "Round-the-Clock Care. Produced by: Maureen Taylor."

A family video shows a dad holding two babies and a toddler by his side.

The father says LOOK AT THAT.

The toddler says ANDREW.

Chris Peters is in his thirties, clean-shaven and with short wavy brown hair. He wears a gray shirt.

Chris says I WAS VERY BUSY
HOUSEHOLD.
WE HAD THREE KIDS IN DIAPERS
AT ONE POINT.
SO THERE'S A LOT OF CHANGING
AND SO ON.
BUT IT WAS A LOT OF FUN,
TOO.
I GREAT TO HAVE THE KIDS SO
CLOSE IN AGE.
AM.

Jodi Peters is in her thirties, with short straight blond hair. She wears a blue sweater.

Jodi says I REMEMBER MY MOM SAYING
WHEN THEY WERE BORN, THEY'RE
GOING TO RUN CIRCLES AROUND
YOU.

Chris says HEY BABIES.
HEY.
MERRY CHRISTMAS.

Maureen says CHRISTMAS 1999
IN THE PETERS HOUSEHOLD.
TWINS RIANNE AND ANDREW HAVE
JUST CELEBRATED THEIR FIRST
BIRTH DAY.

Jodi says SHE WAS PERFECTLY NORMAL
IF THERE'S SUCH A THING AS
NORMAL.
YOU KNOW HOW TO HOLD IT
AND EVERYTHING.
JUST AFTER THEIR FIRST
WE'RE DAY IN DECEMBER RIANNE
GOT A FEVER.
HEAD NO OTHER SIGNS OF BEING
ILL.
SHE JUST GOT THIS FEVER.
WE WERE GIVING HER THE
TYLENOLS, BATHING HER,
KEEPING THE FEVER DOWN, SO
ON.
IT JUST DIDN'T GO AWAY.
IT JUST KEPT COMING BACK.
SO WE DECIDE THEY SHOULD
PROBABLY BE SEEN AT THE
HOSPITAL.
SO CHRIS PACKED HER UP.
IT WAS NEW YEAR'S EVE 1999.
TOOK HER TO THE HOSPITAL.
WHILE THEY WERE THERE SHE
SUFFERED A SEIZURE FROM THE
HIGH FEVER.
SO THEY INTUBATED HER.
BECAUSE SHE HAD EATEN DURING
DAY THE WHEN THEY INTUBATED HER SHE
VOMITED.
ALL THE FEED WENT INTO HER
LUNGS SO THEY CALL IT AN
ASPIRATION PNEUMONIA.
I GOT A CALL.
COULD WE COME BECAUSE SHE
HAD A CARDIAC ARREST.
IN THE PROCESS OF CHANGING
ONE OF HER TUBES HER
LUNGS WERE SO STIFF THAT THE
AIR JUST BLEW HOLES IN HER
LUNGS.
HER LUNGS COLLAPSED.
ALL THE AIR COMPRESSED ON
HER HEART AND HER HEART
STOPPED BEATING.
THE REST I GUESS WAS
HISTORY.

She enters Rheanne’s room and says GOOD MORNING.

The caregiver says HOW ARE YOU?

Jodi says I'M OKAY.
HOW WAS HER NIGHT?

The caregiver says NOT TOO BAD LAST NIGHT.

Maureen says 2 AND A HALF YEARS LATER THE
PETERS LIVING ROOM RESEMBLES
A HOSPITAL NURSERY.
RIANNE HAS SEVERE BRAIN
DAMAGE AND CHRONIC LUNG
DISEASE.
HER LUNGS HAVE TO BE CLEARED
THROUGH A TRACHEOTOMY TUBE
INTO HER THROAT AND FED WITH
AN IV IN HER TOM AC.

The caregiver says MY HUSBAND ACTUALLY GOT

Jodi says I WAS A LITTLE BIT CARED
TO HAVE HER COME HOME.
I KNEW I WOULD BE THE
PRIMARY CAREGIVER.
AT THAT POINT WHEN WE FIRST
THOUGHT RHIANNE WAS COMING
HOME JOSH YEAH WAS STILL
HOME.
HOW AM I EVER GOING TO DO
THIS IN A DAY?
I'M GOING TO HAVE HER ALL TO
MYSELF.
SHE DOESN'T SLEEP AT NIGHT
WEST.
NEED THE NURSING HOURS WE
HAVE TO COVER NIGHT SHIFTS.
I HAVE MEALS TO MAKE AND
LAUNDRY TO DO, AND RHIANNE TO
TAKE CARE OF PLUS TO SPEND
EQUAL TIME WITH THE BOYS.
IT WAS A VERY SCARY THOUGHT.
THE SCARIEST THING FOR ME IS
HER TRACH.
IT IS HER LIFELINE IN A LOT
OF WAYS.
CHRIS AND I CAN BOTH TAKE IT
OUT AND PUT IT BACK IN.
IF IT COMES OUT WHEN YOU
LEAST EXPECT IT TO COME OUT
OR IT GETS PLUGGED IT'S VERY
SCARY THING.
IT'S A VERY SCARY THOUGHT TO
THINK I COULD BE THE
DIFFERENCE BETWEEN LIFE AND
DEATH FOR HER.

The caption changes to "Barbara McCOrmack."

Barbara is in her fifties, with short straight blond hair with bangs. She wears a houndstooth jacket with an animal print scarf.

She says THERE IS NO DOUBT THAT
THE STRESS ON THE FAMILY TO
DEAL WITH THEE KINDS OF
SITUATIONS IS ACUTE.
I WOULD CHALLENGE ANYBODY TO
SPEND AN EVENING WHEN THEIR
CHILE IS VERY SICK AT HOME
THINKING THAT WITHIN THE
NEXT 15, 20 MINUTES YOUR
CHILD MIGHT BE DEAD.
AND YOU DON'T LIVE WITH THIS
ONCE.
YOU LIVE WITH THIS
PERPETUALLY.
YOU COULD LIVE WITH THIS
WEEK IN, WEEK OUT DAY, IN,
DAY OUT.
KNOWING THAT IF SOMEBODY
ISN'T THERE, IF SOMEBODY IS
NOT LOOKING, IF SOMEBODY
DOESN'T TAKE APPROPRIATE
ACTION YOUR CHILD IS NOT
GOING TO BE ALIVE.

She holds a disabled child and says to a caregiver HOW ARE YOUR HIPS DOING?
HOW ABOUT THE PAIN?

The caregiver says SHE JUST HAD SOME VALIUM
LAST NIGHT.

Maureen says 12-YEAR-OLD
SARAH McCORMICK WAS BORN
WITH ACARDI SYNDROME A RARE
GENETIC DISORDER THAT
AFFECTS ONLY GIRLS.

Barbara says SHE'S QUADRIPLEGIC.
SHE HAS NO FUNCTION OR USE
OF ANY LIMB.
SHE CAN HOLD NOTHING IN HER
HANDS.
SHE CAN'T SPEAK.
SHE CAN'T HOLD HER HEAD UP.
SHE CAN'T ROLL, SHE CAN'T
MOVE.
SHE'S BLIND.
SHE HAS A SMILE THAT MELTS
HEARTS AT A HUNDRED PACES.
SHE HAS A PERSONALITY SECOND
TO NONE AND SHE WILL GET HER
MESSAGE ACROSS ONE WAY OR
ANOTHER.
SHE'S ABSOLUTELY A DELIGHT.
SHE JUST HAPPENS TO HAVE A
LOT OF NEEDS.
AND AT THE MOMENT WE'RE
DEALING WITH VERY FRAGILE
HEALTH.

Maureen says LIKE RHIANNE
SARAH QUALIFIES FOR THE
MAXIMUM AMOUNT OF HEM CARE
IN ONTARIO.
THAT DOESN'T EVEN GIVE HER
MOTHER BARBARA A FULL
NIGHT'S SLEEP THROUGH THE
WEEK.

Barbara says SARAH HAS TO BE TURNED
EVERY SURE CURING THE NIGHT.
SHE HAS TO BE ATTENDED TO.
SHE COULD VOMIT.
SHE CAN CHOKE.
SHE COULD STOP BREATHING,
VARIOUS OTHER THINGS.
I USE TO HELP ME GET A
NIGHT'S SLEEP, HOWEVER, IT'S
NOT QUITE AS GOOD AS IT
SOUNDS BECAUSE I HAVE TO GET
UP AN HOUR OR AN HOUR AND A
HALF BEFORE THE SHIFT TENDS
TO HELP GET SARAH READY FOR
SCHOOL.
SO, IN FACT, THE AMOUNT OF
NIGHT I GET IS AROUND SIX
HOURS.

Jodi says ONE OF US STAYS UP UNTIL
MIDNIGHT UNTIL THE NURSE
COMES.
DURING THE WEEK WE'RE UP AT
QUARTER TO SIX IN THE
MORNING.
ONE OF US IS GETTING AN
HOUR'S SLEEP.
WE ROTATE BUT THRILL ARE
SOME NIGHT THAT'S ALL YOU
CAN DO TO KEEP YOURSELF
AWAKE UNTIL MY NIGHT FOR THE
NURSE TO COME.
NURSING IS STILL AN ISSUE.
WE HAVEN'T GOT THAT IN
PLACE.
SOME NIGHT WE STILL HAVE TO
DO ON OUR OWN AN I STILL
HAVE TO CARE FOR RHIANNE ALL
DAY.
LOTS OF THINGS DON'T
GET DONE.
THAT'S JUST KIND OF LIFE FOR
US UNFORTUNATELY.

Barbara says YOU WILL FIND THAT MOST
PARENTS WITH PROFOUNDLY
DISABLE CHILDREN, THERE'S A
STAY AT HOME PARENT.
IF THE MARRIAGE IS STILL
INTACT USUALLY THE MOTHER
STAYS HOME.
IF THE MARRIAGE IS NOT
INTACT WHICH SADLY OCCURS IN
EIGHT OUT OF TEN CASES,
YOU'VE NORMALLY FINE THE
MOTHER IS ON WELFARE.
I AM A SINGLE PARENT AND I
NEED TO GO OUT AND WORK.
I NEED TO BE ABLE TO SUPPORT
SARAH.

A clip shows Barbara transporting Sarah in a special chair that hangs on a rail on the ceiling.

Barbara says I NEED TO HAVE A LIFE.
I DON'T WANT TO BE ON
WELFARE AND I CHOOSE TO TRY
TO BALANCE MY LIFE WITH
SARAH'S NEEDS AND HOLDING
DOWN QUITE A RESPONSIBLE
JOB.
IT'S A REAL BALANCING ACT.

Jodi says IDEALLY, IT WOULD BE
GREAT TO HAVE MANY THREE OR
FOUR-HOUR SHIFTS DURING THE
DAY SO I CAN RUN DOWN TO THE
LAUNDRY AND NOT WORRY ABOUT
IS F SHE'S COUGHING AND
VOMITING AND I'M MISSING IT.
TO VACUUM TO.
GO OUTSIDE WITH ANDREW TO.
GO TO THE STORE AND NOT MAKE
IT A HUGE DEAL BECAUSE IT'S
DIFFICULT TO TAKE RHIANNE
PLACES BECAUSE SHE REQUIRES
SO MUCH EQUIPMENT.
SHE'S PART OF THE COMMUNITY.
SHE NEEDS TO BE OUT.
SHE NEEDS TO BE STIMULATED
BY OTHER THINGS, BUT IT'S
CERTAINLY NOT EASY.

Barbara says NOBODY PLAN FOR THESE
CHILDREN TO LIVE THIS LONG.
TYPICALLY, CHILDREN WITH
SARAH'S NEEDS, PERFECT FOUND
NEEDS, WOULD NOT HAVE
SURVIVED VERY LONG, IF THEY
HAD BEEN BORN 20, 30 YEARS
AGO.
SO MEDICAL SCIENCE HAS DONE
WONDERS IN KEEPING OUR
CHILDREN ALIVE, KEEPING THEM
HEALTHY.
BUT THE SYSTEM IS STILL
EXPECTING THEM TO DIE.
WHEN THEY'RE VERY YOUNG AND
THEREFORE NOT CONTINUE
NEEDING SERVICE FOR THE LONG
HAUL.

Rheanne and her brother lie on Rheanne’s cot.

Jodi says OKAY.
CAN I PICK HER UP THEN?

The boy says NO.

Di says YOU WANT TO SNUGGLE A FEW
MORE THINGS IN.

The boy says YEAH.

Jodi says THE WHOLE IDEA OF HAVING
A CCAC PROGRAMME WAS TO GET
THE KIDS OUT OF THE
INSTITUTIONS AND INTO YOUR
HOME.
INTO YOUR COMMUNITY, BUT
THEY'RE NOT PROVIDING THE
SERVICES FOR US TO BE ABLE
TO DO THAT.
CHRIS AND I HAVE HAD A
DIFFICULT TIME.
THERE ARE MOMENTS, YOU KNOW,
WHEN I THINK OKAY DID I
SPEAK TO HIM TODAY?
IT'S JUST BECAUSE YOU GET SO
BUSY DOING THINGS.
YOU WANT FAMILIES TO BE
FAMILIES AND TODAY TOGETHER,
THEN YOU NEED TO PROVIDE THE
SUPPORT AND SERVICES FOR US
TO BE ABLE TO DO THAT.

Jodi shoots some medicine on Rheanne’s IV and says THIS IS THE OTHER ONE FOR
YOUR SEIZURES.

Jodi says I TRY NOT TO THINK THAT
FAR AHEAD.
I JUST TRAY TO GO
DAY-TO-DAY.
KIDS WITH CHRONIC DISEASE,
PREINJURY, CHRONIC
PNEUMONIAS DON'T ARE A VERY
LONG LIFE SPAN.
SO I JUST TRY TO TAKE
DAY-TO-DAY AND ENJOY THE
TIME WE HAVE WITH HER NOW.

Barbara says AND I HAVE TO SAY THERE
IS NO DIFFERENCE IN THE LOVE
THAT WE HAVE FOR OUR
CHILDREN THAN ANY OTHER
PARENT HAS FOR THEIR
CHILDREN.
BECAUSE OUR CHILDREN HAVE
DISABILITIES MAKES THEM NO
DIFFERENT IN ANY WAY
WHATSOEVER.
I ADORE MY DAUGHTER.
I LOVE HER TO BITS.
I WOULD HATE FOR ANYTHING TO
HAPPEN TO HER.

Chris picks up Rheanne and says DO YOU HAVE A COUGH?
YOU HAVE A COUGH?

Chris says I'M SCARED ABOUT OUR
FUTURE.
WE'RE GOING TO HAVE
MODIFICATIONS TO OUR HOUSE.
THERE'S GOING TO BE A LOT OF
THINGS THAT MAKE US VERY
NERVOUS.

Barbara says WE NEED THIS.
THIS IS NOT A LIFE THAT
WE'RE LIVING.
THIS IS AN EXISTENCE.
IT'S AN EXISTENCE THAT'S
PATCHED TOGETHER AND YOU
NEVER KNOW FROM ONE DAY TO
THE NEXT JUST HOW GOOD OR
BAD IT'S GOING TO BE.

The caption changes to "Chris Peters."

Chris says YOU DO WHAT YOU HAVE TO
DO, AND PEOPLE ALWAYS SAY
HOW DO YOU DO IT?
DO YOU WHAT YOU HAVE TO DO.
BUT IT'S AWFULLY TOUGH
WITHOUT HELP.

Jodi says YOU KNOW, WHAT RHIANNE IS
FALLING ASLEEP.
[(music plays)]

A slate reads "Report on Home Care. Many of the institutions that could care for Rheanne and Sarah have been closed. Those that remain open have waiting lists of up to 16 years."

Now Maureen sits in the studio with three guests.

Maureen says WE'RE DELIGHTED
TO HAVE BARBARA McCORMICK
JOIN US NOW ALONG WITH KAREN
PARAN OF QUEENS UNIVERSITY
AND SUSAN DONALDSON FROM THE
ONTARIO ASSOCIATION OF
CCAC'S.
KAREN WHAT, STRIKES YOU AS
YOU WATCHED THE STORIES OF
BARBARA'S FAMILY AND THE
PETERS FAMILY CARING FOR
THESE CHILDREN?

The caption changes to "Karen Parent. Department of Rehabilitation Medicine. Queen’s University."

Karen is in her forties, with short slightly wavy blond hair with bangs. She wears a checker brown blazer and a beige turtleneck sweater.

Karen says THINK WHAT STRIKES ME
THE MOST IS THE EXTENT IN
WHICH THEY'RE BEING ASKED IT
TAKE ON THE RESPONSIBILITY
THERE.
IS WITHOUT DOUBT MOST
PARENTS FAMILIES, DAUGHTERS
ARE WILLING TO DO AS MUCH AS
THEY POSSIBLY CAN.
WHEN IT EXCEEDS THEIR
CAPACITY TO COPE I THINK WE
REALLY ARE IT REVISIT THAT
AS A SOCIETY AN CAN OURSELVES
IF THAT'S APPROPRIATE.

Maureen says BARBARA WHAT,
COULD WE CHANGE IN THE
SYSTEM THAT WITH BERT MEET
THE NEEDS OF FAMILIES LIKE
YOURS?

Barbara says I THINK WE'D LIKE TO
CHANGE THE HOME CARE
REGULATIONS THAT PRESCRIBE WHO
YOU CAN GO TO FOR THE LEVEL
OF CARE YOU RECEIVE.
I THINK WE'D LAKE THE
FLEXIBILITY TO BE ABLE TO AT
TRACK WORKERS WITH DIFFERENT
LEVELS AN TRAIN THEM WITH
OUR CHILDREN AND THEREFORE
MAKE THE MONEY EXTEND A LOT
FURTHER.
SO IT WOULD BE AN
INDIVIDUALIZED FUNDING.

Maureen says SO YOU'RE SAYING THERE
WOULD BE A SORT OF BUDGET
FOR YOUR CHILD.
YOU WOULD SIT DOWN WITH
SOMEONE AND WORK IT OUT AND
HERE'S HOW I WOULD WANT IT
SPENT.

Barbara says AND YOU WOULD PROBLEM
SOLVE HOW TO BEST SPEND THAT
MONEY IN THE INTEREST OF THE
CHILD AND THE FAMILY IT COME
UP WITH THE BEST SOLUTION,
THE BEST SPEND OF THAT MONEY
YOU CAN POSSIBLE A CHIEF FOR
THAT FAMILY.

Maureen says DOES THAT CUT
OUT THE CCAC'S, SUSAN?

Susan says IT MIGHT.
I THINK WHAT'S IMPORTANT IS
THAT WE KEEP OUR FOCUS ON
MEETING THE NEEDS OF THE
INDIVIDUALS AND THE FAMILIES
THAT ARE SUPPORTING THEM.
THERE ARE MODELS.
ALREADY AT PLAY IN ONTARIO
FOR THE PHYSICALLY DISABLED.
AND THERE ARE MODELS FOR
CHILDREN I BELIEVE IN OTHER
PROVINCES, BRITISH COLUMBIA
IS ONE THAT COMES TO MINE.
I DON'T THINK THE CCAC'S ARE
ABOUT CONTROLLING THOSE KIND
OF THINGS.
I THINK WHAT THEY WANT TO DO
IS ENSURE THAT THOSE
FAMILIES AND CHILDREN ARE
GETTING THE AMOUNT OF CARE
THEY NEED TO KEEP GOING.

Maureen says KAREN, YOUR
THOUGHT ON THAT MODEL?

Karen says I THINK IT'S AN EXCELLENT
IDEA.
I THINK IT'S CONGRUITY WITH
THE STUDY DONE BY THE ROHR
INSTITUTE IN 2000 THAT THE
NUMBER ONE PRIORITY THAT WAS
MENTIONED THAT PARENTS WANT
FLEXIBILITY.
THEY WANT CHOICE AND THEY
WANT CONTINUITY OF CARE AND
THEY WANT THEIR CHILDREN TO
BE CARED FOR IN A MANNER
THAT THEY PERHAPS CAN
INFLUENCE AS WELL.
SO THE MODEL IS DEFINITELY
ONE THAT SHOULD BE
INCORPORATED.
IT IS BUT IT ISN'T ENOUGH.

Barbara says IT JUST DOESN'T WORK FOR
US HAVING ALL OF THE
CONTRACTS GIVEN TO SERVICE
PROVIDERS, AGENCIES IF YOU
DON'T HAVE NURSES.
THEY CAN'T PROVIDE THE
NURSE.
WE CAN'T EVEN GIVE HOURS
THAT AROUND ALLOCATED.

Maureen says BECAUSE THERE'S
A SHORTAGE OF STAFF.

Barbara says THERE'S NO FALLBACK.
THERE'S NOTHING THAT SAY IF
THOSE AGENCIES DON'T HAVE
WORKERS THEY CAN GO
SOMEWHERE ELSE.
IT'S LIKE TOUGH GO WITHOUT.
WE'RE NOT EVEN GETTING THE
HOURS THAT ARE GIVEN BY THE
CCAC.
IT'S NOT BEING MANAGED WELL
FOR US.
SURELY IF WE CAN MANAGE
G-TUBES AND MANAGE PUTTING
TUBES UP AN DOWN NOSES
SURELY WE CAN MANAGE THIS
FUNDING AND DO A BETTER JOB
BECAUSE THE JOB IS NOT BEING
DONE.

Susan says I THINK THE FAMILIES NEED
TO MAKE THAT DECISION
THEMSELVES.
OBVIOUSLY BARBARA IS VERY
CAPABLE AND WILLING AND ABLE
TO DO THAT.
SOME FAMILIES JUST MAY FIND
THAT THE HIRING AND TRAINING
AND SO ON OF SERVICE, OF
NURSES AND WORKERS IS MORE
THAN THEY CAN MANAGE.

Maureen says I WONDER IF
WALTER ROBINSON WERE STILL
HERE MIGHT HE WONDER ABOUT
THE ACCOUNTABILITY OF THAT
SYSTEM.
IF WE GAVE FAMILIES THIS
MONEY HOW DO WE KNOW... OF
COURSE YOU'D SPEND IT ON
SARAH, BARBARA.
HOW DO WE KNOW EVERY FAMILY
WOULD?

Barbara says YOU'RE NOT GIVEN THE
MONEY.
YOU'RE GIVEN THE BUDGET AND
YOU GET TO SPEND THE BUDGET
BUT YOU ONLY SPEND IT BY
SUPPLYING INVOICES FROM
RECOGNIZED PEOPLE.
YOU MAY CHOOSE IT SPEND IT
IN AGENCIES.
FOR EXAMPLE, I MAY CHOOSE
MORE PERSONAL SUPPORT
WORKERS FOR DEVELOPMENTAL
SERVICE WORKERS WHO I CAN
PERHAPS GET MR. 16 DOLLARS AN HOUR
INSTEAD OF 34 DOLLARS AN HOUR OR
42 DOLLARS AN HOUR.
SO I MIGHT STRETCH MY
DOLLARS JUST BY TRAINING
SOMEBODY WITH MY DOLLAR WITH
GREAT A SPECIALTY, WHO WILL
DEAL WITH HER NEEDS.
THIS DOESN'T MEAN THEY CAN
NOW GO OUT AND CHANGE EVERY
OWE KNEE EXACTLY.
I WOULD TRAIN THE WORKER.

Karen says THE MODELS THAT ARE OUT
THERE DO HAVE ACCOUNTABILITY
FRAMEWORK.
THAT SHOULDN'T BE THE
DETRIMENT, THE FACTOR THAT
IN ANY WAY INHIBITS THIS
MODEL FROM BEING PUT IN
PLACE.
I THINK SUSAN IS QUITE
CORRECT.
WE HAVE TO OFFER THE CHOICE.

Maureen says IF HAD IS SO
WONDERFUL AND THERE ARE
MODELS OUT THERE WITH
COMMUNITY AND SOCIAL
SERVICES, SUSAN WHY DON'T WE
HAVE THAT FOR HOME CARE?

Susan says WE HAD ARE WE KNOW THAT
THERE WAS WORK DONE IN A
NUMBER OF YEARS WITH THE
INTEGRATED CHILD AND YOUTH
AREA.
FOR WHATEVER REASON IT NEVER
MOVED FORWARD.
I THINK THESE GROUPS WHO
LIKE BARBARA ARE KEEN AND
ENTHUSIASTIC ARE THE ONES
WHO CAN PUT THIS ON THE
AGENDA IT'S CERTAINLY IN THE
A DEBATE.

Maureen says I KNOW SHE'S
TRYING.
WHAT ELSE WOULD IT TAKE?

Karen says I THINK WHAT'S POINTED
OUT IS HOME CARE DOESN'T
TEND TO BE IN THE EAR OF THE GOVERNMENT.
THIS IS A TIME TO CONTINUE TO GET A
STRONGER VOICE.
IT'S NOT.
THERE THE POLITICAL WILL
ISN'T THERE BUT THE MODEL ITSELF
NEEDS FURTHER EVALUATION.
THE PARENTS ARE SAYING IT
HAS ITS CHOICE.
WE'RE RELYING PRETTY HEAVILY
TO SUPPORT A SYSTEM AT THE
MOMENT.

Maureen says THANK YOU VERY MUCH FOR
DOING THIS.
OUR PANELLISTS HAVE RAISED
MANY GOOD QUESTIONS TONIGHT,
QUESTIONS THAT CAN ONLY BE
ADDRESSED BY THE PEOPLE WHO
ULTIMATELY DESIGNED
ONTARIO'S HEALTH CARE SYSTEM.
WE WENT TO QUEEN'S PARK IT
TALK WITH ASSOCIATE MINISTER
OF HEALTH HELEN JOHNS.

The interview rolls.

Maureen says WELCOME.
THANKS FOR JOINING US.
HOW SATISFIED ARE YOU, FIRST
OF ALL, WITH THE LEVEL OF
HEM CARE BEING PROVIDED AT
THE MOMENT TO ONTARIANS?

The caption changes to "Helen Johns. Associate Minister of Health."

Helen says WELL THE GOVERNMENT
BELIEVES THERE NEEDS TO BE
CHANGES IN HOME CARE AND
THAT'S WHY WE'VE STARTED TO
MAKE SOME SUBSTANTIAL
CHANGES.
HOME CARE IS IN ITS INFANCY
STAGE IN THE PROVINCE OF
ONTARIO.
IT STARTED IN 1997 BEING
TAKEN OVER BY THE PROVINCE
AND WE HAVE A LOT OF THINGS
THAT WE THINK NEED TO CHANGE
OVER THE COURSE OF THE
ENSUING YEARS TO BE ABLE TO
GET MORE QUALITY SERVICES,
TO GET THEM OUT INTO THE
RURAL REACHES OF THE
PROVINCE TO ENSURE WE HAVE
THE RIGHT PEOPLE PROVIDING
THE SERVICES.
SO WE'RE MAKING CHANGES RAG
NOW TO BRING ABOUT A BETTER
HOME CARE SERVICE IN THE
PROFESSOR SINCE?

Maureen says HOW REALLY ARE YOU MAKING
CHANGES THAT WILL AFFECT THE
AMOUNT OF HOME CARE PEOPLE
SAY THEY NEED?

Helen says WELL LET ME SAY THAT
PEOPLE ARE LOOKING FOR A
SYSTEM WHERE WE TAKE THE
BEST PARTS OF DIFFERENT
SYSTEMS AND USE THEM AS BEST
PRACTICES ACROSS THE
PROVINCE.
IF THEY'RE DOING SOMETHING
WONDER NULL WINDSOR WE WANT
TO USE THAT IN OTTAWA,
OTTAWA CREATING ITS OWN
MONEY, TOO.
RIGHT NOW IN THE PROFESSOR
BINS 25 percent OF EVERY BUDGET IS
SPENT ON ADMINISTRATION AND
CASE MANAGEMENT, AND THAT'S
A LOT OF MONEY NOT GOING TO
THE PATIENT.
AND SO BY LOOKING AT' CHANGE
IN GOVERNANCE AND CASE
MANAGEMENT ROLE WE WILL BE
ABLE TO PUSH MORE DOLLARS
DOWN TO THE PATIENT ALSO.
WE'RE ALSO LOOKING AT HOW WE
CONTRACT WITH SERVICE
PROVIDERS, SO THAT THE
SERVICE PROVIDERS GIVE US
THE BEST QUALITY FOR THE
BEST PRICE SO THAT WE CAN
PROVIDE MORE SERVICES.
SO WE HAVE A NUMBER OF
THINGS WE'RE LOOKING AT TO
TRY TO MEET THE NEEDS PEOPLE
ARE TELLING US IN THE
PROVINCE.

Maureen says THAT ADMINISTRATIVE
COST YOU MENTIONED IS
SOMETHING WE HEARD OVER AND
OVER AGAIN FROM PEOPLE WHO
USE THE SYSTEM THAT REALLY
IRKS THEM.
ONE OF THE MODELS THAT ONE
OF THE MUMS SUGGESTED TO US
SHE WITH LIKE TO SEE THAT
HELPED HER IS SOMETHING SHE
REFERRED TO AS
INDIVIDUALIZED FUNDING OR
SELF-MANAGED CARE.
I BELIEVE WE DO THIS FLOOR
ONTARIO IN COMMUNITY AND
SOCIAL SERVICES.
WHY NOT THAT MODEL FOR HOME
CARE AS WELL?

Helen says WELL WE DO THAT IN
SPECIFIC... IN SPECIFIC
AREAS AND WE DO THAT IN THE
MINISTRY OF HEALTH, TOO.
FOR SOME PEOPLE WHO ARE ABLE
TO MANAGE THEIR OWN
EMPLOYMENT, FOR EXAMPLE.
IF YOU HAVE A PERSON WHO HAS
A DISABILITIES AN NEEDS
SOMEONE TO COME IN AND GET
THEM OUT OF BED AND DO THOSE
KINDS OF THINGS WE HAVE THAT
HEALTH SERVICE NOT IN
HOMEMAKING, BUT WE CERTAINLY
HAVE THAT HEALTH SERVICE
THAT YOU CAN NEGOTIATE WITH
THE MINISTRY OF HEALTH.
THE ISSUE WITH THAT IS
THERE'S VERY FEW PEOPLE WHO
CAN MANAGE THE EMPLOYMENT
THAT'S ASSOCIATED WITH
HIRING PEOPLE TO PROVIDE
SERVICE 24 HOURS A DAY,
SEVEN DAYS A WEEK.
THAT'S NOT PART OF WHAT THIS
PROGRAMME EVER WAS DESIGNED
AS HOMEMAKING AND HEALTH
CARE PROGRAMME I'M TALKING
ABOUT WAS EVER DESIGNED TO
PROVIDE.
THIS IS SHORT-TERM SERVICES
TO GET PEOPLE BACK ON THEIR
FEET, TO GET THEM TO BE ABLE
TO STAY IN THEIR HOME IF
THEY NEED A FEW SERVICES TO
ALLOW THEM TO BE THERE.
IT'S NOT PROVIDING 24 HOUR A
DAY, SEVEN DAY A WEEK
SERVICE.
IT'S HEALTH CARE SERVICES
TOO.
IT'S NOT HOUSEKEEPING
SERVICES.
FROM THAT AND IT POINT WE
HAVE TO DEFINE VERY
CAREFULLY WHAT WE DO.

Maureen says WHAT ABOUT THE FAMILIES
WHO HAD, SAY, CHILDREN
COMPLEX NEEDS THEN.
THEN THERE ARE NO
INSTITUTIONS, AS I
UNDERSTAND, IT HOPE ANYMORE
FOR THESE CHILDREN AND THEY
DO NEED 24-HOUR ROUND THE
CLOCK CARE.
WHAT'S THE SOLUTION FOR
THEM?

Helen says CERTAINLY, WE'RE WORKING
ON SOLUTIONS.
JOHN BAIRD THE MINISTER OF COMMUNITY AND
SOCIAL SERVICES HAVE LOOKED AT
SEVERAL PROGRAMMES TO
PROVIDE SERVICES IN THE
AREA.
WE HAVE SELF-ADMINISTERED
PLANS THROUGH SERVICES WHICH
ALLOWS PEOPLE TO CONTRACT
THEIR OWN CONTRACTS IF
THEY'RE ABLE TO DO THEN.
THE HOME CARE SERVICES WE'RE
TALKING ABOUT TODAY AS WHEN
A PERSON COMES OUT OF A
HOSPITAL AND THEY NEED HELP
TO BE ABLE TO GET HOME
QUICKER.
AND WHEN YOU HAVE A SENIOR
OR SOMEONE WHO NEEDS HELP IN
THE SHORT-TERM TO BE ABLE TO
TAKE CARE OF THEMSELVES OR
KEEP IN THEIR HOME AS
OPPOSED TO GOING INTO AN
TUITION.
THIS IS NOT A DEVICE TO STOP
PEOPLE FROM GOING INTO
LONG-TERM CARE FACILITIES
AND GROUP HOMES.
WE CAN NEVER PROVIDE 24 HOUR
A DAY 7 DAY A WEEK
INDIVIDUAL SERVICE IN
EVERYBODY'S HOME ACROSS THE
PROVINCE.
WE JUST CAN'T AFFORD IT.

Maureen says IS THAT WHY YOUR
GOVERNMENT HAS INVESTED
QUITE HEAVILY IN LONG-TERM
CARE BEDS AND NURSING HOMES?
IS YOUR MESSAGE THEN WE
CAN'T LOOK AFTER YOU IN THE
HOME THE WAY THEY DO IN A
NURSING HOME SO GET READY IT
PUT YOUR FRAIL MOTHERS IN A
NURSING HOME.
THAT'S WHERE SHE'S GOING TO
HAVE TO GO.

Helen says WE BELIEVE THERE'S A
CONTINUUM OF CARE THAT
HAPPENS IN HEALTH CARE.
YOU MAY BE IN A HOSPITAL AT
ONE TIME.
YOU NEED TO BE IN A
HOSPITAL.
THERE ARE TIMES WHEN YOU CAN
BE IN THE COMMUNITY, TOO.
WE'VE INVESTED VERY HEAVILY
DOLLARS IN THE HEALTH CARE
COMMUNITY SERVICES.
WE'VE MOVED FROM 600
MILLION DOLLARS IN 1997 TO 1.2
BILLION DOLLARS.
THAT'S A 72 percent INCREASE OVER A
THREE OR FOUR-YEAR PAN.
WE BELIEVE THERE'S PEOPLE WE
HAVE TO HELP IN THE
COMMUNITY IT TODAY IN THE
COMMUNITY, BUT WE ALSO
BELIEVE THAT AT MANY POINT

I THINK ABOUT MY PARENTS
THAT IF THEY GET ISOLATED IN
A HOUSE BY THEMSELVES I WANT
THEM TO GO TO A FACILITY SO
THEY HAVE INTERACTION WITH
OTHER PEOPLE THAT WE JUST
DON'T HAVE SOMEONE COMING IN
FOR A COUPLE OF HOURS A DAY
AND MAKING MEALS FOR THEM
AND GETTING OUT OF BED.

Maureen says I WONDER IF
THAT'S A SHIFT IN SOCIETY.
I THOUGHT IN THE 80'S WE
DECIDE NURSING HOMES AND
LONG CARE INSTITUTION
WHERE'S NOT WHERE THEY
NEEDED TO BE.
HAVE WE DECIDE THAT'S NOT
FEASIBLE.

Helen says MOST OF THE BUDGET OF
HOMEMAKING AND HOME CARE IS
IN NURSING.
SO WE DO PROVIDE NURSING,
BUT WE LOOK AT IT AS A WHAT
WE CAN DO AND WE'RE NOT
FEELING WELL.
I HAVE ARTHRITIS IN MY LEG AND
IT'S REALLY BAD.
I NEED SOMEONE TO HELP YOU
BUT I DON'T NEED SOMEBODY
THIS WEEK.
WE'VE INVESTED BILLIONS OF
DOLLARS OF TAXPAYERS TO HAVE
THE BEST LONG-TERM CARE
FACILITY IN THE PROVINCE,
TOO.
THERE ARE BIGGER ROOMS,
SEPARATE BATHROOMS.
THERE ARE LOVELY FACILITIES.
WHAT WE'RE TRYING TO DO IS
DIFFERENT TIMES YOU NEED
DIFFERENT SERVICES AND
HEALTH CARE.
IN ONTARIO YOU'RE GOING TO
HAVE THE WHOLE GAMUT SO YOU
CAN HAVE THE BEST SERVICES.

Maureen says WITH THE PASSAGE
OF BILL 130, YOU'VE MOVED TO
REALLY GET IN THERE AND SORT
OF TAKE CONTROL OF NOT ONLY
THE BOARD OF DIRECTORS IN
CCAC'S BUT EVEN SOMETIMES
FIRING EXECUTIVE DIRECTORS
AND REPLACING THEM.
HOW DOES THAT KIND OF
MICROMANAGEMENT ON THE PART OF
YOUR MINISTRY HELP THE DARE
GIVERS AND THE PEOPLE WHEN
NEED HOME CARE.

Helen says WELL THE PEOPLE OF THE
PROVINCE HAVE TOLL US THEY
NEED CHANGE.
SOME OF THE THINGS YOU'RE
TALKING ABOUT HOW MUCH
SERVICE I SHOULD GET, WHEN I
SHOULD GET THAT SERVICE.
PEOPLE ARE WRITING TO ME ALL
THE TIMING A WE NEED TO LOOK
AT THIS ACROSS THE PROVINCE.
WE CAN ONLY DO THAT BY
LOOKING AT THE GOVERNANCE
ISSUES AND LOOKING WITH
PEOPLE WHO ARE PREPARED TO
MAKE CHANGES TO BETTER THE
HEALTH CARE.
WE CAN ONLY DO THAT BY
LOOKING AT HOW WE CAN BETTER
MANAGE CASE MANAGEMENT.
WE JUST CAN'T ARE 25 percent OF THE
BUDGET TIED UP IN
ADMINISTRATION AND DECIDING
WHEN GETS SERVICES AS
OPPOSED TO GETTING SERVICES.
FROM THAT STANDPOINT WE NEED
TO BE MORE ACT ANY THAT AS A
PROVINCE AND WE INTEND TO
BE.
WE ALSO NEED TO BE MORE ACT
ANY HOW THE CONTRACTS GET
BETWEEN SERVICE PROVIDERS
ARE EVALUATED, HOW THEY ARE
ENTERED INTO.

Maureen says ARE YOU
PROMISING A MORE OPEN...
BECAUSE RIGHT NOW WE DON'T
GET A LOOK AT THOSE
CONTRACTS AND HOW THE ACC
GETS WHICH CONTRACT.
ARE YOU PROMISING THE PUBLIC
WILL BE ABLE TO SCRUTINIZE
THIS PROMISE.

Helen says WHAT WE'RE SAYING IS
WE'RE GOING TO HAVE A VERY
OPEN AND TRANSPARENT
PROCESS.
I'M NOT SAYING THAT
EVERYBODY IS GOING TO BE
ABLE TO LOOK AT EVERYBODY
ELSE'S BID IN CONTRACT.
OBVIOUSLY THERE'S HUMAN
RESOURCE ISSUES.
IBM SAYING THE PROCESS IS
GOING TO BE VERY OPEN AND
IT'S GOING TO BE THE SAME
PROCESS THAT HAPPENS IN
WINDSOR THAT HAPPENS IN
OTTAWA AS HAPPENS IN THUNDER
BAY.

Maureen says FINALLY MINISTER JOHNS,
WHAT IS YOUR MESSAGE TO ALL
OF THE CAREGIVERS OUT THERE?
AS MUCH AS WE SAY WE PROVIDE
THE NURSING CARE IN THE HOME
THERE'S STILL A LOT OF WORK
BEING DONE BY FAMILY MEMBERS
TO LOOK AFTER THESE PEOPLE.
WHAT DO YOU WANT TO SAY
TO THEM IN.

Helen says THINK THERE'S ALWAYS
GOING TO BE A MIX.
FOR ME TO SAY FAMILY MEMBERS
ARE NO LONGER GOING TO HAVE
TO BE A PART OF THEIR
PARENTS LIVES IS... TO BE
ABLE TO PROVIDE THE BEST
HEALTH SERVICES IN THE
PROVINCE.
WHAT WE'RE DOING WITH THE
CHANGES WE'RE MAKING IN
COMMUNITY ACCESS CARE
CENTRES OVER THE LEFT MONTH
AND INTO THE NEXT YEAR IS
WE'RE GOING TO STRENGTHEN
THOSE SERVICES.
WE'RE GOING TO PROVIDE
BETTER QUALITY SERVICES.
WE'RE GOING TO MAKE SURE THE
SERVICE PROVIDERS ARE BEING
FAIR TO THEM AS THEY ENTER
INTO THE CONTRACT AND WE'RE
GOING TO START TO PUSH
DOLLARS DOWN TONE ASSURE THE
PEOPLE WHO NEEDED SERVICES
GET THE SERVICES.
WE HAVE A BIG JOB AHEAD OF
US BUT WE'RE VERY PREPARED
TO DO THIS.
THIS WAS SOMETHING DESIGNED
BY THIS GOVERNMENT AND WE'RE
GOING TO MAKE SURE THAT IT
WORKS.

Maureen says MISSUS JOHNS
THANKS VERY MUCH.

Helen says YOU'RE WELCOME.

[(music plays)]

Maureen says AND THAT WRAPS
UP OUR SPECIAL EDITION OF
YOUR HEALTH."
WE HAVE A LIVES HEM CARE
RESOURCES POSTED ON OUR WEB
SITE AT:

A caption reads "www.tvo.org/yourhealth."

Maureen says I'M MAUREEN
TAYLOR.
JOIN US AGAIN AT OUR REGULAR
TIME TUESDAY AT 7:30 FOR
ANOTHER EDITION OF YOUR
HEALTH.

A final slate reads "Your Health. Email: yourhealth@tvo.org. Fax: 416-484-4519. Mail: Box 200, Station Q, Toronto, ON, M4T 2T1."

(music plays)

The end credits roll.

Executive Producer, Patricia Ellingson.

Host and Producer, Maureen Taylor.

Producer, Cathy Perry.

Director, Michael Smith.

Logo: CEP Local 72m.

A production of TVOntario. Copyright 2002, The Ontario Educational Communications Authority.

Watch: Your Health Season 3 Episode 27 - Homecare Special